Abstract

Summary: An academic-community partnership between a school of nursing (SON) at a public university (the University of Virginia, or UVA) and a public mental health clinic developed around a shared goal of finding an acceptable shared decision making (SDM) intervention targeting medication use by persons with serious mental illness. The planning meetings of the academic-community partnership were recorded and analyzed. Issues under the partnership process included 1) clinic values and priorities, 2) research agenda, 3) ground rules, and 4) communication. Issues under the SDM content included: 1) barriers, 2) information exchange, 3) positive aspects of shared decision making, and 4) technology. Using participatory-action research (PAR), the community clinic was able to raise questions and concerns throughout the process, be actively involved in research activities (such as identifying stakeholders and co-leading focus groups), participate in the reflective activities on the impact of SDM on practice and policy, and feel ownership of the SDM intervention.
Keywords: Participatory-action research, shared decision making, recovery, person-centered care, medication use, serious mental illness.
Citation: Mahone IH, Farrell SP, Hinton I, Johnson R, Moody D, Rifkin K, Moore K, Becker M, Barker M. Participatory action research in public mental health and a school of nursing: qualitative findings from an academic-community partnership. J Participat Med. 2011 Feb 23; 3:e10.
Published: February 23, 2011.
Competing Interests: The authors have declared that no competing interests exist.

Introduction

Participatory-action research (PAR) is increasingly seen as an effective way of enhancing the relevance of scientific research, bridging science and service, and improving the adoption of evidence-based practice in health care. In this study, the investigator proposed the development of a PAR initiative starting with a core group of mental health providers at a public mental health clinic and including relevant stakeholders in the community. The primary investigator had completed a pilot study on shared decision making (SDM) in medication use by persons with serious mental illness, and presented this topic to the clinic for consideration.[1] This concept was in keeping with recent activities at the mental health clinic aimed at promoting consumer recovery, because SDM can be viewed as one way to support consumer recovery. This topic proved to be of interest to both the clinic and the researchers and motivated both groups to commit time and effort to explore it.

This paper reports on a qualitative study of the process of developing a participatory research partnership, focusing on two key elements–how to work together, and how to establish what exactly to do together. SDM is the topic of mutual interest that motivated the partnership in this project.

Background

PAR was put forth by Small[2] as one of four different kinds of action-oriented research (also including action research, empowerment research and feminist research), all of which are grounded in a postpositivist paradigm where human subjects are viewed as active, self-reflective collaborators who play a critical role.[2] In PAR the academic research team actively partners with community members and stakeholders in the entire research process.[3] The collaboration between the researcher and the researched results in an increased likelihood that relevant and usable questions are asked, that results are believed and acted on, and that research participants are changed and empowered. It also promotes local ownership of the study and the findings, and gives value and legitimacy to various sources and forms of knowledge.[4][5] In this model, the researcher is not viewed as the sole possessor or gatekeeper of knowledge, does not have complete control over design and implementation, and is not totally in charge of dissemination. However, PAR has been used successfully as a model to partner with community agencies in clearly proscribed, researcher-initiated topics. PAR researchers believe the study should value the participants as well as the researchers and recognize and value the expertise and knowledge of the participants. Therefore, in a PAR study the researchers are not free to decide the details of design and implementation; rather these decisions evolve as a result of continuous dialogue and group process.

SDM is a transactional and interpersonal model of communication where health care providers and patients work collaboratively to select treatment and care that includes patients’ health experiences and preferences. SDM requires the exchange of information between two experts–the consumer and the provider. The expertise should be mutually acknowledged and integrated in a negotiation which leads to the final best-treatment decision. In SDM, “the practitioner becomes a consultant to the client, helping to provide information, to discuss options, to clarify values and preferences, and to support the client’s autonomy.[6]” SDM may be one means of creating greater engagement, buy-in and accountability in medication use by persons with long-term illness.[7][8] Although illness self-management strategies have long been accepted as evidence-based practice in mental health,[9] some consumers, caretakers, and professionals are still reluctant to embrace self-management in relation to medication use.[10]

This paper provides an overview of the PAR process applied in this public mental health clinic around the topic of mutual interest–SDM in medication use by persons with serious mental illness. This paper also reports the findings from a qualitative analysis of the transcriptions of the planning meetings. The ongoing qualitative analysis, along with the dialogue and regular minutes, contributed to the final decision achieved by the end of the study. Specific aims of this one-year study included 1) information-gathering on SDM from stakeholder groups in the local community, 2) information-gathering on SDM from the literature and national experts, and 3) consensus-building related to a specific SDM intervention to be tested at the mental health clinic based on the information gathered.

Methods

The academic-community research team (Partnership) was formalized, representatives from both institutions were identified, and verbal commitments made to engage in exploration activities including identifying stakeholder groups, reviewing the relevant literature, and bringing in an external expert.

Setting

The mental health clinic is the single point of entry for public substance-use services, mental health services, and services for the intellectually impaired, located in central Virginia, with self-sustaining clinics in five counties. An agency of local government, the clinic serves approximately 6000 people each year of which approximately 1250 persons have a diagnosis of serious mental illness. Population-base statistics for 2008 indicated that 41% were female, 62% white, 26% African-American, and 2.5% Hispanic.

Design

A core group of mental health service providers were identified at the mental health clinic who were interested in advancing SDM in persons with serious mental illness and in forming an academic-community liaison. A meeting was arranged to create a work group to explore SDM. The clinic leadership expressed a clear interest in involving consumers whom they served. The Clinic/UVA-SON Partnership Research Team (Partnership) was formalized–a mixed professional group of eight experts in leadership, clinical and academic positions representing psychiatry, nursing, pharmacy, occupational therapy, social work, consumer advocacy, and health services research. The Partnership decided to meet once a month. Complete recordings were kept of each meeting and minutes were generated and distributed to the group members after each meeting.

From these recordings, detailed transcriptions were created for the purpose of analyzing the participatory-action process and activities. The transcriptions identified all speakers and noted any interruptions in speech. The data were verified, de-identified and entered into the qualitative data analysis computer software package NVivo (http://www.qsrinternational.com/products_nvivo.aspx). Through content analyses patterns in the qualitative data were identified, coded, and categorized.[11] The text was read and reread to identify significant strips, breakdowns and general themes. Larger categories were identified based on similarities between the themes, and they were then organized into the most frequent responses. To assess reliability, the transcripts were analyzed independently and the coding compared. During this process, any new areas of importance were noted. The themes were then shared with the Partnership to enhance the validity and accuracy of the analysis.

Information gathering activities included conducting focus groups with stakeholder groups, arranging for a one-day training by a national expert, searching the literature, and networking with other mental health groups throughout the country (such as the Dartmouth SDM consortium and the Substance Abuse and Mental Health Services Agency, or SAMHSA, initiatives). Details of the focus group methods and findings are reported in a companion article.

Results

The qualitative analysis used transcriptions of the recordings of the Partnership meetings. The Partnership met at least once a month, a total of 10 times between June, 2008 and February, 2009. Seven focus groups were conducted with different stakeholder groups between November, 2008 and March, 2009. The expert consultant provided one full day of training and consulting. The issues identified were grouped into two general categories, the academic-community partnership (process) and SDM (content). Issues under process included 1) clinic values and priorities, 2) research agenda, 3) ground rules, and 4) communication. Issues under content included 1) barriers, 2) information exchange, 3) positive aspects of SDM, and 4) technology. Direct quotes are identified here as community participant [C] or academic participant [A].

Clinic Values and Priorities

The mental health clinic partners clearly articulated their mission and values. They described a process at their clinic over the past few years which had laid the foundation for implementing the Recovery Model for persons with serious mental illness in their programs and practice.

The direction the clinic was moving was said to [C] “really fit well with the SDM model because that’s an empowerment value.” Participating in a program on SDM was seen as [C] “another facet of person-centeredness” and a [C] “science-to-service relationship.” Providers, however, said they needed to be [C] “assured frequently and periodically that this is something that we’re going to be able to put to use. It’s important that it results in some changes that are positive to the work that we do.” The partnership was described as [A] “figuring out how far you [the mental health clinic] have come and what’s the next step.” Providers noted the importance of having all staff, including psychiatrists, on board with the clinic’s values.

Concerns were expressed about the fact that [C] “very powerful psychotropics” can have serious side effects. They were also concerned about the low rates of follow-through with medication use. The hope was expressed that the Partnership activities would help to understand more fully [C] “why individuals stop using their medications, why hospitalizations happen, and what’s available…that would help individuals…make the decisions that actually foster them remaining in the community longer.” The importance of finding the right medication regimen for each person was stressed as important in creating buy-in and a willingness to follow through with the medication plan. One SDM prototype discussed was “Common Ground,” where medication use is viewed as valuable to the degree that it helps to reach personal goals.[12]

Newly implemented electronic records were discussed, as were ways in which they could facilitate person-centered treatment planning and SDM. The suggestion was made to use the single-service plan to connect different services of the agency, helping different mental health staff to be on the same page. A single-service plan organizes all treatment services such as medications, housing, and employment in one plan that encompasses all the services, and is accessed by providers in each of those departments offering those services.

Research Agenda, Dissemination, and Grants

There was discussion about suitable outcome measures to use in a study of SDM. The importance of follow-through with medication use was seen as a central key focus in this kind of trial.

The hope was expressed that although the focus would start with medication use, it would possibly [C] “ripple out to other aspects of care beyond prescribing medications.” Academic partners noted there might be a need to develop creative ways to measure [A] “medication use in reaching your individual goals” rather than measuring adherence or compliance. Recovery-oriented versus symptom-only outcomes were discussed. Suggestions included [C] “the degree or the level of involvement, the level of motivation, the level of feeling included,” whether [C] “people collaborate better,” and involvement in the greater community.

One possibility involved using existing satisfaction data that the mental health clinic collects annually from consumers and non-consumers they serve at the clinic as a baseline measure and comparing it [C] “…after year two, three or four of having implemented some SDM.”

Outcome measures reported in the literature were reviewed, including [A] “…client-practitioner relationship, the quality of communication, the amount of client participation, satisfaction, adherence…clinical outcomes…functional status…symptoms.” It was decided that input from various stakeholders regarding outcomes could help guide the work group.

Findings from the focus groups could potentially demonstrate what has already been done on SDM in this community, reflecting the groundwork that has been laid, thereby demonstrating that we could, in fact, implement and evaluate SDM at this clinic.

Ground Rules

The differences between PAR and conventional research methods were discussed by the group. Honoring the process inherent in PAR required that the group respect suggestions and input from both sides in the evolution of the final plans and research design. The Executive Director at the mental health clinic was clear that this Partnership needed to yield something valuable for the clinic. Honesty and forthrightness were valued. Plans to record each meeting, transcribe the recording, and analyze the transcriptions were announced to the group. Lack of clarity about the purpose of the Partnership and the goals of the study was expressed as a challenge numerous times. One community member said that the “goal is to develop this project with us, not for us or to us.”

Communication

Relevant SDM articles gleaned from the literature were compiled by the first author and discussed in the meetings. It was announced that the articles discussed would also be posted on the electronic website for everyone to view. The first author provided a continuous literature update and identification of seminal articles in the field.

While making plans to conduct focus groups with stakeholders, one Partnership member offered to summarize the plans so far and communicate that to everyone: [C] “I’ll just put a matrix together about the groups and the schedule and then you can let me know.” There was agreement in the group to establish an electronic website to facilitate communication in the Partnership.

Expert Consultant

In considering the option of bringing in an expert from SAMHSA, concerns were expressed about how someone from a high-level government agency would be viewed by mental health consumers. This concern was offset, however, by the emphasis this particular agency puts on recovery, their commitment to the consumer-driven effort, and the comments made by the expert being considered. Eventually there was agreement that to have an expert consultant from SAMHSA would not [C] “diminish our consumer impact.”

Roles and activities of an expert consultant were discussed. It was suggested that a consultant could help with an SDM education process and then help to hammer out the details of the grant application. The final choice was a psychiatrist who was known for coauthoring a book on person-centered treatment planning and whose partner had earlier consulted with this clinic around person-centered training and in-services.[13] He had also spearheaded development of a decision aid, a structured tool that helps individuals clarify personal values related to a decision. After the completion of the consultant visit, concerns were expressed that to insert a decision aid into the clinic without adequate preparation could undo some of the progress that had been made in creating a culture promoting mental health recovery for consumers over the past few years.

Information Gathering and Stakeholders

Soliciting information from relevant stakeholder groups was identified as one of the first major tasks of the partnership. The mental health clinic’s data on stakeholder satisfaction surveys was discussed as a possible tool. Additionally, statewide consumer satisfaction survey data were available. Community stakeholder groups outside of the formal public mental health treatment system were also identified.

Focus groups

There was discussion about how to recruit participants and about the purpose of the focus groups. The authors expected to recruit consumers from all points along the continuum of participation for focus groups. Some were expected to be content to be passive participants in treatment, as has been the expectation in the traditional medical model of treatment. Others would talk about recovery but not grasp the true meaning of recovery. Still others would truly be on a path to recovery and be active participants in their care process.

In planning focus groups, mental health service providers other than prescribers were grouped together. They included nurses, case managers, support staff, social workers, and residential managers. Three focus groups were conducted with consumers of mental health services. Prescribers at the mental health clinic (psychiatrists and nurse practitioners) were also at various points on the continuum in embracing person-centeredness. There was some discussion about how to best present SDM to prescribers. It was suggested that they might understand an approach from an evidence-based practice perspective and the presentation of scientific findings. It was suggested that many of them might already practice SDM to some degree.

The pros and cons of doing homogeneous groups (eg, consumers alone) or heterogeneous groups (consumers and providers together) were discussed. The suggestion to do a town hall type meeting with consumers received numerous objections. They included the size of the group (40-45), the chaos expected at such a meeting, the ability of the members to provide information, and the fact that this was not an effective information-gathering method.

Barriers to SDM

Conducting focus groups with various stakeholders was thought to offer an opportunity to identify and address some of the fears and stereotypes people had about SDM–for consumers and providers.

Questions were raised as to whether actively psychotic consumers were competent enough to participate in SDM. It was expected that there would be considerable variability among consumers. Concerns were also raised about encountering traumatic effects from past coercive treatments. Consumer fears can take many different forms, especially for persons having their first psychotic break. Sometimes consumers have concerns that no one will understand their fears. It was expected that only a small percent of consumers would feel free to be 100% honest.

The barrier of the power imbalance was discussed. Although traditionally psychiatrists have had the authority to determine whether and how much antipsychotic medication is prescribed, they too had fears that saying “the wrong three words” might affect the consumers for the rest of their lives. The traditional medical model usually leaves the consumer feeling quite disempowered.

The power the consumer, in fact, has in the traditional model was also pointed out in that “the minute that consumer walks out of your office, they’re totally in charge.” Partners noted that acknowledgment of the power on both sides and a willingness to shift some of that power might be an indication of a good SDM interaction.

The speculation was made that consumers would probably be at varying degrees of readiness, which prompted a conversation about the matching of an SDM intervention to stage of readiness. It was felt that for consumers who were ready, the option should be available: [C] “There needs to be an opportunity for when you’re ready. And readiness is highly subjective.” The stage-of-readiness question was also raised in reference to prescribers and other mental health providers, and their juxtaposition to consumers’ stage of readiness. Stage-of-readiness dialogue led to a discussion of diffusion-of-innovation theory, according to which early adopters are recognized and used to promote a new concept.

Lack of training and/or preparation for the consumer was identified as a potential barrier to SDM. It was agreed that this training should include the dimension of self-awareness, being able to recognize symptoms, medication’s beneficial effects, medication’s toxic effects, patterns, trends and effective coping mechanisms. Partners agreed that providers of mental health services also need additional training and preparation and mastering of skills to coach consumers. Partners suggested that training could include videos of successful examples of SDM or self-reflection worksheets.

Positive Aspects of SDM

Partners agreed that this process is in keeping with the values and priorities promoted at the mental health clinic. Participating in a program on SDM was seen as [C] “another facet of person-centeredness” and a [C] “science-to-service relationship.” Use of an actual Decision Aid was viewed as one way of promoting the Recovery Model and person-centered treatment planning throughout the clinic.

The belief was expressed by some that SDM was already being practiced in the clinic and it might be a way to [C] “be a bridge between the public safety folks and the person-centered folks.” Staff noted that SDM has the potential to increase follow-through on medication use and improve other clinical symptoms.

Information Exchange

One of the challenges identified in planning for SDM is the complexity of the information that is available on diagnosis and treatment of serious mental illness. The decision aid presented by the consultant seemed very bulky and concerns were expressed that the information would overwhelm the consumer.

Individual response to a prescribed medication is very important information. One consumer said, [C] “for me personally, one of the things that it [risperidone] did was it disconnected me from my memories, my past memories, and for people who have been through trauma who don’t want to revisit that is a great medication, but for someone like myself… Now, if I wasn’t able to have input in that discussion…I would definitely be non-compliant.”

The other necessary and valuable information needed was what the consumer actually does with the medicine, such as [C] “my own experience in how I titrate my box.” The two-way conversation and the shared understanding were identified as crucial components of SDM. That decisions need to be made repeatedly in a long-term condition was another dynamic identified.

The clinic participants mentioned their new electronic record system and how it could possibly facilitate an SDM intervention in the future. The clinic’s ability to use their electronic system to promote SDM was acknowledged. The SON also had access to computer technology expertise.

Discussion

In addition to allowing this Partnership Team to meet its goals of exploring the concept of SDM and making a decision about an SDM intervention in the clinic, this qualitative study offered lessons about applying PAR that are important for future groups wanting to undertake similar partnerships. In this study, the research was originated by the researcher in academia. Stoecker contends that “initiator” is one of many roles the academician can play in PAR.[14] Minkler suggests that care must then be taken to confirm that the topic is a high priority for the community clinic and that topics originating with the researcher can become “owned” by the community, so that they truly reflect their priorities.[5] Dialogue during the early phase of this partnership revealed aligned efforts within the mental health clinic to creating a person-centered environment, a concept congruent with SDM as proposed by the researchers.

Insider-outsider tensions were evident early on, as seen in comments by community members who needed to be reassured “frequently and periodically” that whatever was decided had to help them accomplish their clinic mission and goals. Also, when suggestions were elicited as to which journals were appropriate to publish the findings, some community members expressed a lack of interest in that aspect of the PAR. Although the community members were invited to participate in the review of the transcripts, and the transcripts were posted on the Partnership website to facilitate that, no one chose to participate in that activity. This is consistent with what other PAR researchers have observed in that time could be in “short supply” for community participants.[14] The different foci represented by the academic institution and the treatment clinic were discussed openly and kept in continual awareness. Although community members were not reimbursed directly for participating in the Partnership, the clinic was paid a consultation fee as a small token of appreciation for their time. Although incentives for focus group participants were budgeted, the clinic offered to provide the refreshments.

Informal ground rules developed as the Partnership evolved and “partnership synergy” was experienced in the dialogue around strengthening both research and service grant proposals. “Insider knowledge” provided by community members, for example, helped the Partnership decide not to use the decision aid presented by the expert consultant, based on practical implementation problems identified by service providers. The need for adequate communication was recognized by the Partners and discussed often. A private website was set up through the university which allowed posting of announcements, minutes, agendas for meetings, recordings, transcripts, and relevant articles from the literature. Monthly face-to-face meetings were agreed on early, and occasional extra meetings were called. Phone calls, emails, and individual meetings were also used. Meeting agendas and minutes were utilized to assist memory.

Conclusion

The primary purpose of the current project was to create a viable academic-community partnership model, thus laying the foundation for implementing an acceptable, feasible SDM intervention targeting medication use for persons with serious mental illness. This paper reported on the qualitative study of the process of creating this partnership. The PAR research method used focused on clinic strengths and recognized valuable knowledge of community participants. Utilizing both a core group of interested mental health service providers (including a consumer advocate) and a larger pool of lay and professional stakeholders, after 10 months of information gathering from stakeholders and experts, the Partnership agreed on an intervention to be implemented at the clinic. The greatest difficulty encountered in using the PAR method was “insider-outsider” tension and the additional time needed to design a study on which there was agreement. The greatest benefits of using PAR included allowing the community clinic to raise questions and concerns throughout the process, be actively involved in research activities (such as co-leading focus groups), participate in the thinking about implementing SDM nationwide and its impact on practice and mental health policy, and to feel greater ownership of the SDM program and evaluation.

Acknowledgement

This research was supported in part by NIH-NINR grant P20NR009009, Rural Health Care Research Center at the University of Virginia, School of Nursing.

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Copyright: © 2011 Irma H. Mahone, Sarah P. Farrell, Ivora Hinton, Robert Johnson, David Moody, Karen Rifkin, Kenneth Moore, Marcia Becker, Margaret Barker. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the authors, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.